Working together to support families with a disability

People living with a disability and their families can find it difficult to get the support they need wherever they live, but often the services available in rural areas of Australia make it even harder for people and children with a disability to meet even their most basic needs.

Xander and his mum Kylie

Eight-year-old Xander, who lives in the rural town of Walgett, NSW is one of those who needs support. Diagnosed with hydrocephalus (an accumulation of cerebrospinal fluid in the brain) when his Mum, Kylie, was 20 weeks pregnant, Xander and his family have had to navigate ‘red tape’ all his life and they have struggled to find the support they need due to his complex disability.

Four years ago, the MacKillop Rural Community Services (MRCS) early childhood intervention and therapy support team started supporting Xander and his family, providing therapy sessions set out by local physiotherapists and occupational therapists, and working on an NDIS plan to get Xander a wheelchair and other aides.

MRCS provides support for children from birth to twelve years with a disability and/or developmental delay, and their families. Staff work closely with the children and their families in their natural environments focusing on goals and priorities they have identified.

After assisting Xander and his family with an NDIS plan throughout the year, a new walker was delivered along with a new bathroom commode, car seat and Xander will soon receive an all-terrain chair.

Tanya Whitley, MacKillop’s early intervention worker was instrumental in coordinating support for Xander.

“Even when Xander started school two years ago he came to school in a standard stroller as the family could not gain access to a wheelchair and did not have the $10,000 it would cost to purchase a wheelchair suitable to his needs”.

“You can imagine Xander and his Mum’s face”, said Tanya, “they were so excited. It was a really special day thanks to the NDIS, his occupational therapist and the MacKillop early intervention team pushing for Xander to have access to equipment which will help him live the amazing life he deserves.”

Xander’s Mum Kylie says the support has made a huge difference to their lives,

“It’s not just the big things, like Xander’s wheelchair which have changed our lives, it’s the everyday things, like being able to attend a local play group that can cater for Xander; everyday activities like this make such a difference.

The support has just been incredible. Being in a remote area, it’s really hard to find that constant support. MacKillop has never wavered, we know they will always be there to support our family.

With offices throughout rural NSW, MRCS provides services including: family support; parenting and early childhood education support; early childhood intervention therapy; support to young people who are vulnerable and at risk of homelessness; in-home accommodation support to adults with a disability to assist them with independent living; and long-term accommodation and support to adults with a disability.

The next challenge for the team is to approach Walgett Shire Council to get a wheelchair swing in the local park. Xander will love it!